Surviving against all odds: 5-year-old among those to benefit from Easter Seals walk

Kristen LeJeune was told her unborn child would die shortly after birth. If she survived as an infant, she might live a year or two.

LeJeune couldn’t accept that. She wanted to at least hope her daughter would survive. So, on the advice of a doctor, she found hope in waiting to see how her daughter did after birth.

On June 25, Lily’s family will celebrate the 5-year-old’s life and the help and hope they have received through Easter Seals Northern Ohio.

Kristen LeJeune and daughter Lily

The family will participate in the 9th annual Walk With Me event and fundraiser. The two-mile fitness walk will take place at The Toledo Zoo to raise funds for Easter Seals, which helps individuals and families with children like Lily.

“I was 20 weeks pregnant when I found out she had hydrocephalus, which is water on the brain. With this condition, it doesn’t properly drain,” LeJeune said. “When she was born, she had encephalocele, a skull deformation, which caused a hole in the back of her skull.”

Easter Seals got involved with Lily’s family immediately. It provided Lily with a special needs car bed because she could not support her head. As she grew, Easter Seals bought a replacement bed.

LeJeune said this is appreciated. The beds are expensive and not something that can be bought at a local store. She estimates one bed as costing more than $500, which is a huge expense for her family, which includes husband, Jeff, and sons, Lucas, 10 and Logan, 7.

While Lily has had surgeries on her skull to close the hole, the water on the brain will be a lifelong problem.

She has a shunt to help drain the fluid and it has only malfunctioned once. The biggest struggles these days are visual delays and keeping her epilepsy under control. She can walk on her own, “but you can tell she has a different type of walk,” LeJeune said.

“She speaks clearly and makes good sense of things,” she said. “She is 5, but it is like talking to a littler kid. If you ask her to go get something, she will say, ‘Sure,’ but if you ask what is outside, she just looks at you.”

Patti Lee, events manager for Easter Seals Northern Ohio, said fundraisers like the zoo walk help fill the gap in the government money that funds most of its programs.

Among those programs are services for adults and children with special needs and disabilities and home care for senior citizens. The nonprofit also provides disability awareness workshops for schoolchildren, offers medical equipment loans on a short-term and long-term basis and sends children to special needs camps.

Last year’s zoo walk attracted 130 people with the goal for this year at 150 to 200. Lee said the registration cost of $35 for adults and $5 for children 12 and younger includes a T-shirt, lunch and ticket to the zoo after the walk. Lily’s family raised $1,300 for the walk last year.

“We feel like it is a great opportunity to have it at the zoo and have a scavenger hunt, eat lunch and then they get a wristband to go back to the zoo. We are usually done by 12:30 p.m., so they can make a day of it,” Lee said.

LeJeune said Lily looks forward to the walk every year. Just attending is a miracle because when she was first born, doctors said she could be in a vegetative state.

“She is definitely not that. She is pretty happy where she is at. She is a social girl. When there is attention on her, she eats it up. She has fun being around people.”

Easter Seals Walk With Me

-June 25 at The Toledo Zoo

- 9 a.m. registration, 10 a.m. walk start

$35 for adults, $5 for children 12 and younger

-Registration includes T-shirt, lunch and one admission ticket to return to the zoo after completion of the event.